Ballantyne and Sullivan: “Opioids are a case in point: they have good short-term efficacy, but
there is little evidence supporting their long-term benefit.”

To say
there is “little evidence supporting the long-term benefit of opioids for
managing pain” is simply not true. There are plenty of us who are able to
function better because our pain is managed with opioids. You simply do not
hear about them because good news is no news. Maybe you meant to say there are
few studies. For which I reply, “Where is the EVIDENCE that long-term opioid
treatment doesn’t work for managing for chronic pain?”

Ballantyne and Sullivan: “But is a reduction in pain intensity the right goal for the treatment
of chronic pain?”

I
doubt few chronic pain patients, if any, expect their pain to be completely alleviated regardless of the treatment pathway. But they do expect reduction in intensity. Patients
with this goal are far wiser than you are.

Whether
pain is acute or chronic, it is a symptom. Assessment for location, onset, duration, character,
AND intensity of any symptom is considered the standard of care for good
reason. I hope I don’t have to explain why.

People
experience chronic pain for two reasons, the underlying cause is untreatable,
and/or misfiring in the brain causes pain to persist that otherwise wouldn't. Our brain extrapolates information and responds to chronic pain differently, but it is still pain. So, I ask Dr. Ballantyne and Dr. Sullivan, “Do
you seriously believe assessing pain intensity is not important?” If you truly disagree with your peers on this, you are breaching the standard of care. You might want to think about this too editors and publishers of the New England Journal of Medicine. Is the message of bias against a certain patient population the one you want to send?

Ballantyne and Sullivan: “Patients
who report the greatest intensity of chronic pain are often overwhelmed, are
burdened by coexisting substance use or other mental health conditions, and
need the type of comprehensive psychosocial support offered by multimodal
treatment approaches.”

I agree
that people who live with chronic pain can feel overwhelmed. I am feeling
overwhelmed reading this article. Why don’t you ask the pain doctors who
include this aspect of their care for their opinion? Sure, we experience situational
depression and anxiety, just LIKE YOU DO! But you are describing people with
addiction, very real, but needing a different treatment, also woefully
unavailable. Why should I even have to ask, “What does addiction have to do with
pain intensity?”

It
does take a multimodal approach to manage chronic pain. The pain patient
certainly knows that better than you do. We have resorted to, and been the
victim of, charlatans that claim they have a cure. I have found meditation to be helpful with coping, but that doesn’t
cure the conditions that cause my pain. Ask how many of us keep several ice packs on hand for fear we won’t have enough. Ask us how many times we have been
blistered by a heating pad because that was still less pain. Ask us how many
use ointments, OTC products, TENS units or are willing to have electricity
delivered to our spinal cord, just so we can have a REDUCTION IN OUR PAIN
INTENSITY!

Maybe you should ask the patient about the remedies they have tried before you write such an "insensitive" article.

And, shouldn’t
opioids be included as integrative care if they reduce pain so patients can
participate in complimentary therapies? Oh that’s right, you don’t think a
reduction in pain intensity is an important measurement.

While we’re
at it, “When was the last time your physician asked about your spiritual
awareness, or your circumstances at home?” And, just on the chance that they
did (because they are in tune with treating the body as a whole) were they able
to provide you with resources? If they could provide access to alternative
treatments, are they affordable for everyone?

Drs.
Ballantyne and Sullivan incorrectly state that the U.S.established a National
Pain Strategy (NPS) to address the enormous burden of chronic pain to 100+
million American adults. In fact, the NPS draft was completed by summer of 2014
but has not re-emerged from the U.S. Dept. of Health and Human Services since
then (18+ months) despite requests by many patients, citizens, professional
medical groups, and patient advocacy organizations. Chronic pain patients are
worse off now because many doctors refuse to treat them; one result of
unintended consequences from recent opioid abuse deterrent policies. Lack of a
NPS and research funding hurts everyone. With no access to care or new,
effective treatments, people with chronic pain are literally cast aside by
society and treated inhumanely. The authors would like us to believe that NPS
initiatives are in place, reducing suffering and brain-seizing pain, when they
ask the ludicrous question, “But is a reduction in pain intensity the right
goal for the treatment of chronic pain?” I guess that life-altering and
debilitating chronic pain must not be such a burden after all.

If
you are a doubter, be grateful, you have not experienced such pain, because one
day you may. I have witnessed the change in perception in my own circle of
family and friends. If you need a narcotic, it isn’t so bad after all.

“The only pain
that is tolerable is somebody else’s.”

~David Sherry, MD, pediatric
rheumatologist

Put
your thinking hat back on. Don’t be part of the problem, be part of the
solution. Embrace this adversity as an opportunity for change before you
seriously harm someone, including yourself.

Saturday, December 5, 2015

In my last blog, The
Setting, the Shutter, and the Power ofResolution, I talked about my 2015
New Year’s resolution. It's about translating 35mm film photography to my new
digital SLR camera. The blog is more than that though; my story is a metaphor
that unveils the face of opportunity when we are faced with the challenges
associated with living with chronic pain and illness.

A Universal Language

Most of you reading this blog know I am a writer of self-help books. If you
have read any of the four books in the Broken Body, Wounded
Spirit: Balancing the See-Saw of Chronic Pain series, co-authored with Jeff
Miller, PhD, you know each day offers an exercise or a tidbit of information to
inspire new ways for managing daily challenges. Each day begins with a picture
chosen to convey a feeling on the topic at hand. They are positioned to do one
of two things, reflect on our own treasured moments, or provoke us into action.
A photojournalist knows the impact images have on him or her personally and in
the hearts and minds of everyone who sees them. The language spoken through
photography is universal.

“A picture held us captive. And we could not get outside
it,

for it lay in our language and language seemed to repeat it
to us inexorably.”

― Ludwig Wittgenstein, Philosophical Investigations

The Influence of a Title

Titling a picture seems like such a simple thing. However,
it has a powerful impact on how the photo speaks to us and it provides infinite
possibilities for bringing life into focus. While my title may be different
from yours, it still reflects a personal journey and allows us to explore our
feelings. You don’t have to be a photographer to do this.

Exercise:Find a favorite photo, name it, and then write
a few words about the feelings it brings to surface. You might not remember the
date, or even the circumstances surrounding the photo, but you will remember
how it made you feel.

The power of photos is evident; they have become a visual
experience that is shared across social media. When our emotions erupt, we find
camaraderie as human beings. We can share our journey, photographer or not, the
connections are universal.

Looking Beyond Clouds

The Embodiment of a Pain Advocate.

This picture is from Broken Body, Wounded Spirit:
Balancing the SeeSaw of Chronic Pain, Winter Devotions. I chose this
particular photo for day sixteen, "Advocating for Pain” to represent
several things. Living with chronic pain and illness can cloud our judgment. It
can bring about tumultuous feelings, and sometimes cast a shadow over our desires.
But, it’s more than that to me. This picture also represents a ray of light in
the darkness, the promise of a bright sky, and treetops that lift our spirit
upwards. For me, the telephone lines represent the connection and power we have
to make a difference through advocacy. So, ad hoc, after the fact, I shall name
this picture, “The Embodiment of a Pain Advocate.”

What would you name it, and why?

Unchain Your Imagination

Experts tell us the power of a photo transcends all
generations. So, next time you come across a shared photograph think outside
the box. Take a moment; be flexible in your thinking.

Years ago in an effort to raise my endorphins through
laughter, I began a photo journal of animals. I saved them for my personal
enjoyment and I named them something that would spark the laughter that became
buried by pain and illness. I resurrected my inner goofiness through laughter
and photographs.

We are born with an imagination and when we use it wisely,
we loosen the grip chronic illness can create. Unchain your imagination. Share
the creativity that lives within you.

Tuesday, November 17, 2015

I know, I know, it’s not even Christmas yet. But this is a
story about my New Year’s resolutions from THIS year, January 2015. Since I live with chronic pain, I know the importance of taking
an inventory on what I want to do and
what I can do. This resolution was
certainly both, even though the later has been questionable. You see, the very
first time I saw the world through the lens of my 35mm film camera; I fell in
love with photography. But film photography has become a dinosaur, so I set
about figuring out how to fulfill my desire to capture and manipulate photos
using new technology, leading me to my 2015 resolution.

I will learn to use my new
Canon Rebel T5 SLR camera!

There is an underlying story here about keeping up with the
times, embracing change, and all that good stuff, to be revealed.

Resolution vs.
Resolution

I struggled to translate what I know about film photography
to digital photography. I even bought the book for Dummies specifically for my camera. My New Year resolution, I would
learn, was harder to achieve than setting the resolution of digital photographs.

Having short-term memory loss, I couldn’t remember from one
page to the next; white balance, color space, or focal plane, my head was spinning.
I am embarrassed to say, I couldn’t even remember how to turn the darn thing
on. But if I am anything, I am tenacious.

So, I ditched looking at the book from an academic
standpoint, deciding it was more valuable as a resource. After all, we don’t
read an encyclopedia cover-to-cover—right? (I have since found my difficulty
with this book is not shared with my otherwise mentally sharp friends, I
wouldn’t want you to think this is a bad book review.)

Intimacy with the
Inanimate

Six months in to the New Year, I set my sights on
accomplishing at least one goal.

Trash the anxiety and pick up the camera.

I would soon learn one of the most valuable tools on a
digital camera is the DELETE BUTTON!

My Chronic Pain
Friend and the Shutter Sisters

Probably the best advice I received regarding digital
photography came from one of my chronic pain sisters. You see, she also loves
to do what I do. She knew I was struggling, she understood why I was
struggling. In one exchange of emails, she asked me a question that would
change my world.

Have you heard of the
Shutter Sisters?

I had not, but I have now. I immediately went to their
website. I bought their book, and I quickly became intimate with my camera. I
forced myself to only use the manual settings, and I did what I did not think
was possible, I fell in love with digital photography.

The Cradle of Perfect Imperfection

Here’s How it Happened

I found the LIGHT METER! Oh, what a glorious day that was.
It was my “ah ha” moment, MY “light switch” was on. Terms I thought were lost
to new technology like aperture, depth of field, F-stop, lighting, filters, subject,
ISO were all there. It is so much more than becoming intimate with the
inanimate, it was like that first time I zoomed my lens in on the stamen of a
flower, I was detailing my feelings, setting a historical moment in time, and I
was going to be able to capture it the way I wanted. More than that, I found I
have Shutter Sisters that can see what I see the instant before I release that
shutter. They get why I do what I do as a writer of self-help books too.

These people, my fellow passion driven brothers and sisters,
understand that automatic doesn’t always emote what I am trying to capture. To
me, imperfection often brings clarity, character, and a feeling of that moment that
will forever be etched in my mind, in my heart, and in my soul.

Miles to Go before I
Sleep

Those words, “miles to go before I sleep” (thank you Robert
Frost) can mean many things to those of us who live with daily pain, but in the
context of this blog, it simply means that for all I have learned, for all I
have regained, I have so much more to accomplish. That’s the beauty of it. I am
a work in progress and so is my photography.

So, before you give up my friend, know that your “ah ha”
moment is coming, but you can’t have it if you give aren't determined.

“Many of life's failures
are people who did not realize

how close they were to success
when they gave up.”

~Thomas A. Edison

Thank you Thomas Edison, the brilliance of your wisdom
continues to light the world and guide me as I embrace the power of perseverance.

Friday, November 6, 2015

Are you a woman in pain? I am. My sisters, we have been
identified in the Institute of Medicine Report, “Relieving Pain in America…”as an under-served community that is discriminated against when it comes
to treating our chronic pain. It’s time for that to stop!

I have experienced pain most of my life. I had my first
cystoscopy at age five. At puberty, I developed migraine headaches and irritable bowel syndrome. I have lived with premature degenerative disc and spinal
disease for 30+ years, and have come to know other chronic pain and health
issues intimately, fibromyalgia, myofascial pain syndrome, Hashimoto’s, ME/CFS,
post herpatic neuralgia, and interstitial cystitis. After having extensive shoulder surgeries, I returned to work as a
nurse (considered to be as physically demanding as that of a construction
worker). I paid my own way as a
single mom with two small children. I was board certified in emergency nursing
and I was an expert witness as a legal nurse consultant. I was a typical type
A. But eventually, my ability to keep up - caught up with me.

I will never forget the words on my neurocognitive exam
report, which concluded I have significant short-term memory loss compared to
others my age and education. I didn't need a report to tell me that. I knew I was slipping. But the hardest thing to bear were the words that said I would be a danger to patients. You
see, I was expecting my symptoms would lead to a treatable diagnosis. I would get fixed, and I would get back to a job I loved dearly. After all, I pushed
through any obstacle in life. But, it was not to be. All I could do now was put my head in my
hands and weep.

“Out of suffering have emerged the strongest souls;

the most
massive characters are seared with scars.”

~Kahlil Gibran

Soon after, I found it was easier to let people think what they
must rather than defend something I was struggling to accept myself. I learned the worst, and the most damaging, was not the pain, but the change in the way I was perceived by others. At the most vulnerable time in my life, I had to accept that my family, friends, colleagues, and physicians had forgotten about the person I once was. Through therapy, I learned the
very same people that criticized me for seeking pain care, would indeed do the
same in my position. I learned that chronic pain could only be appreciated if
you experience it. I learned that I needed to be compassionate with my
otherwise healthy friends and family, because they have no control over their
perceptions anymore than I have control over my pain. But I also learned there
is no free ticket to being a bully, which resulted in learning the importance of choosing my friends
wisely.

Women are caretakers, not the other way around. Maybe when
we step outside that role, bias emerges. But, as human beings, we all deserve
to be treated with the same respect and to have access to the same pain care.
I could tell horror stories about the abusive comments and treatment I have suffered at the hands of those who took an oath to do no harm. But from adversity comes opportunity. I took control, and over a decade later, I now have a great team of healthcare providers. But, because of the amount of time it took to find providers with whom I could build mutual trust, I fear what will happen when my husband and I relocate. At my age, I will be dead if it takes that long again. This should not be the case. Regardless of our socioeconomic status, race, gender or where we live in this country, we should all have access to the same pain care and be treated with the dignity and respect we deserve.

If you are a person living with pain or a caretaker, male or female, stand with your sisters in pain become the catalyst for making a difference. Stand with us as an advocate for changing pain care for women. We are in this fight together and we must serve our compassion by being supportive to one another.

Cynthia Toussaint has made it easy for us to speak up. Please take a minute, that’s all it takes, and sign
this most important petition.

Tuesday, October 20, 2015

Our feet are very important parts of our body, after all,
they provide a platform so we can to move around, and they provide our body with
the balance we need to perform many tasks… So what are the causes of foot pain?
Check out my article on Health Central “What’sCausing My Feet to Hurt!”

Foot pain can vary from mildly annoying, to extremely
severe. When you think about it, they are one of our best supporters. So, how
can we support them? Read about the many factors that can perpetuate foot pain
and what you can do to help them out in “How to Report Foot Pain Symptoms.”

Taking the next step could mean a difference in what
treatments are helpful for you and your feet. And that next step means
knowing the right treatment, because treatment plans can vary widely depending
on the cause. Tread lightly, safely, and aware this Halloween. Trick or Treat? “Treatment Options for Foot Pain: How toCare for Our Feet.”

Thursday, October 8, 2015

What a phenomenon many of us had the opportunity to witness
on September 28th, a total eclipse of the moon, a blood moon. And, I captured it with my own camera. What a way to mark the ending
of chronic pain awareness month.

This September was full of events offered by various
advocacy associations. This advocate wants to share with you her contributions
to chronic pain awareness and education on various pain topics.

Scroll on down and you will find a poem written this summer that shares my intimate thoughts on our earth and its treasures.

Thursday, September 24, 2015

I recently had the pleasure of speaking with Dr. Lynn Webster for a
second time, the first being at the gala and symposium Healing What Hurts: The Politics of Pain, which was also organized by the Center for Practical Bioethics
for their initiative, the PAINS Project. You see, before he talked to a full auditorium of people eager to hear what he
had to say, he visited in private with our local patient/citizens leadership
group, Relieving Pain in Kansas City. He wanted to get to know us on a personal level, because
frankly, that’s how he rolls.

This gathering of providers of all pain care disciplines,
patients, medical students, caregivers, and concerned citizens were going to
hear about the journey of an internationally known pain specialist. We walked not
in front or behind him, but beside him, with him, as we learned about his passion
for healing an America that hurts from the stigma of chronic pain.

All those in attendance got a copy of his new book and as we
were gathering, I noticed people were not merely leafing through their copy, THEY
WERE READING IT! Stay with me and you will find out why.

Dr. Webster’s message is irresistible. He tells us The Painful Truth is not a self-help
book, but it is a helpful book. I am in awe of willingness to share his personal
stories, his motivation for being an advocate, researcher, author, and
physician with a dream to make a difference. He underscores the importance of
heart, listening, and understanding that pain is more than a symptom of
disease. He wants everyone across America to know the benefits and risks of opioid
prescriptions, the cultural attitudes, the role caregivers take in our lives and
most of all—the hope of a fulfilling life despite pain.

The Painful Truth Book Trailer

The Painful Truth:
The Documentary

Dr. Webster teamed up with Craig Worth to produce a
documentary. Together this physician and New York and Los Angeles Emmy Award winner
and former network correspondent documented important and truthful messages
from patients and the many people who touch their lives in some way. The documentary
itself is a testament to the spirit and determination this advocate has for
people living with pain, the seriousness of not only untreated or undertreated
pain and suicide, but also addiction.

Dr. Webster and his wife Holly funded the documentary (of
the same title) because they wanted a raw, unfiltered portrayal of chronic pain,
a guttural reaction that would create change in the perceptions associated with
people living with pain, and those who care for them. Though different in some
ways, the theme is the same as the book…

There is a difference
betweenhealing and curing.

The Painful Truth Documentary Trailer (worth every second)

The message is one of hope for a better America, one with compassion
for fellow human beings, an example the rest of the world can lean on.

Physician – Patient Encounter

Dr. Webster told us the first thing he asked new patients was
“What do you want [from pain care]? The answer was always the same, the same
words he continued to hear while doing the documentary, one that resonates
across this nation...

“Doc, I just want my life back.”

He also shares with us that his patients succumb to a primal
release of emotions when he says these three words, “I believe you.” You see,
he found that no matter our life’s experiences, ethnic background, age, or religious
or cultural beliefs—we all share something—the need to be validated. He knows chronic
pain is a thief that robs us of our self-esteem. Sadly, there is a historical—albeit
irreverent—concept that people in pain are weak. Some of us are stuck in a grieving
process because the healing process begins with feelings of trust and respect;
something Dr. Webster admits doesn’t happen often enough. Dr. Webster is a
leader in his field because of his education and experience, but mostly because
he has heart and he knows how important those three words are.

“I – BELIEVE – YOU”

* The documentary will be released later this year, slightly
behind its original production schedule.

In Conclusion

I wake up every morning to pain. On average, three mornings
of seven begin with what I call my 4 a.m. migraine reveille. I stagger on
swollen feet to where I keep my pain medicine of need. My arthritic hands fumble
with the lid as I coax them into action using loving words like, come on you
can do it, and sometimes—though I don’t like admitting it—expletives about the
packaging. Some days that is the only trip I make to that area of my world,
other days, I visit more often than I wish. But I am always grateful for the
many tools that help me function. I am grateful to have a doctor willing to
work with me without making me jump through a hundred hoops. He understands the
unpredictability of the many pain sources I face. He understands that I have no
control over the cause of my pain, but I do have control over knowing what works
best for me. Many are not as fortunate as I am.

I suppose pain defines who I am, but in different ways.
Because of pain, I live a life interrupted. But, I am determined to live a full
life, a grateful life that respects my capabilities. I have learned not to take
things for granted; I appreciate the opportunity to meet the many advocates and
heroes in my life. I am inspired by each, and every, person who is touched in
some way by chronic pain.

So you ask, “What does this have to do with The Painful Truth?” It has everything to
do with it. Reading The Painful Truth
reminds me that I am not on this journey alone. I now begin each day by reading
this book because it provides me with the other medicine I need, inspiration—a
feeding of my mind, my spirit, and my soul—a reminder of the many encounters I
have had with champions, because I live with chronic pain. This is MY painful
truth.

Those of you who follow me on social media know that for
many years my signature has been, “In healing and hope, Celeste”. The Painful Truth reminds me of the
powerful message my signature line was intended to send. Healing is not the
same as curing, and when we hold these words in our hands, in our mind, and in
our hearts, we begin to live a satisfied life.

If you are struggling to find your place, if you are still
working through your grieving process (been there), read this book. Every one
of us needs to hear those words, “I believe you.” Begin the healing process; it
will color your world with hope. The landscape of your existence with pain will
begin anew.

“Chronic pain affects 1 in 3 Americans and exerts more than
a $600-billion drain on the economy annually. It is the largest invisible
epidemic in the land. Having treated thousands of patients with chronic
pain-often when they were at their most vulnerable-Lynn R. Webster, M.D.,
continues to believe there is hope. Ultimately, a cure for pain will require
more research, better therapies, and improved policies. But healing can begin
today with a broad-based approach to treatment, including compassionate support
from those closest to the ones who are hurting. The Painful Truth is an
intimate collection of stories about people living with disabling pain, their
attempts to heal, and the challenges that we collectively face in helping them
live meaningful lives. As a physician who has treated people with chronic pain
for more than thirty years, Dr. Webster reveals the difficulties that patients
face in dealing with chronic pain in a society that is often shamefully
prejudiced against those who are most in need of our empathy. He shares how
such biases also affect medical professionals who treat patients with chronic
pain.” Find The Painful Truth on Amazon

What is a trigger point, with Frank Gresham

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